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Paul, AIDS and a Lesson in Caring by Cynthia Cooper, RN

Friday, 28 Nov 2014 08:56

I have a very wise nurse-friend, we call her “Coop.” I have always thought that she double-dipped from the fountain of compassion. This paper, which she wrote for a Nursing 403 class, proves my suspicions true and gives us all a clue on how to become more like her. This lesson is applicable to ALL of us who care for and serve others, not just those called to nursing:

Jean Watson developed a Human Caring Theory between nineteen seventy-five and nineteen seventy-nine. She sought to find and develop a framework that would bring meaning and focus to nursing and how nurses interact with their patients. (Watson, 2014, pp. 263-264) Watson’s theory promotes the nurse being present, being altruistic, and open to unknowns; allowing for anything to be possible. This theory also encourages nurses to develop loving relationships with patients while maintaining the patients’ dignity when assisting them with basic care. The Human Caring Theory also promotes a healing environment by allowing the patient to express feelings, both positive and negative. (Maltby, 1995, pp. 44-46) I was fortunate enough to put this theory into practice early on in my career.

In nineteen hundred and eighty-eight, the Acquired Immune Deficiency Syndrome (AIDS) was in full swing, and fear was all around the nation in regards to this devastating disease. There was, and still is, no cure, and supportive treatment was very rudimentary. It was inevitable that a patient who contracted AIDS would quickly need supportive care and then palliative care. Times were difficult in health care back then. This is the story of a patient, named “Paul” and a very young nurse’s struggle to make a difference.

After I finished nursing school, I knew that I did not want to stay very long in the place where I had spent the previous ten years of my life. I was raised in small town Alabama and studied nursing at a small college in Georgia. I decided that I would move to a big city. For reasons that are still unclear to me, I picked Washington, D.C. This was no small feat. There was no such thing as the Internet, no cell phones, and no Email. I simply started by looking at a map of the District of Columbia area and saw a familiar name; George Washington. I called the human resources department at George Washington University Medical Center and asked about nursing employment. The lady on the other end of the phone told me that there were openings in the Intensive Care Unit (ICU). I knew this was my ticket out of the one horse town where I was living. I had about a year’s worth of ICU experience and just the right mix of bravery and naiveté to take the plunge. Now, I know we hear about the nursing shortage these days, but there must have been one back then because, believe it or not, they actually hired me! It was contingent on an actual face to face interview of course. But, I had a chance. Much to the skepticism of my mother and the encouragement of my father, I loaded all of my belongings into my Toyota Celica and headed north. In a strange way I believe I was using Watson’s Theory of Human Caring at that moment in my life, but didn’t realize it. One of Watson’s carative factors is cultivating one’s self and by stepping out to fulfill my dream, I was certainly tending to my sense of self. Off I went and found a tiny studio apartment in Falls Church, Virginia and settled into my work. Each day I learned as much as I could and, quite honestly, I faked my way through some situations.

The AIDS epidemic was ravaging through Washington, D.C. Each week we saw four or five young men in our department with pneumocystis pneumonia. Each one of them, like the others before them, gasped for breath and despite our best efforts, died. Some of them were surrounded by friends, family, clergy, or their lovers. Others were left to suffer and die with only the nursing staff to comfort them. One such unfortunate patient who was alone was named Paul. He was a twenty- three year old man from New York City to Washington, D.C. a couple of years before I had. We were very much alike in some ways. Although he was from a large metropolitan city, like me, he had a lot of wanderlust inside of him. There were differences in us as well. I had a family who I was in contact with and, despite my mother’s skepticism, supported my endeavors. Paul was not as fortunate as I was. His family had disowned him when he told them he was gay and the fact that he contracted AIDS led them to cut off all contact with him, perhaps out of fear. So there we were, two humans from very different worlds, thrust together by an awful enemy; AIDS.

Paul was sick when I first encountered him, but he was able to talk to me and we got to know each other pretty well. Each day I cared for Paul, I was able to gain his trust. Following one of Watson’s carative factors, I developed a healthy caring relationship with Paul. He and I were close in age and shared a love of the singing group, Simon and Garfunkel. Their album, “The Concert in Central Park” was our favorite. When Paul was able to, we would sing songs together. When he was too short of breath to sing, I would sing to him. It was clear to anyone within earshot that I had certainly not missed my calling as a singer, but Paul never let on that I sounded as bad as I’m sure I did. I would sing whilst bathing him or helping him out of bed. At any given moment, I would try to cheer him up by breaking out into song. He and I both knew what the end result would be for him, but we did not speak of it in those moments. We were just two youngsters, kids really, who were connecting. Caring moments occur when one person conveys a concern and connects with another person’s inner self and spirit. (Malinski, 2006, pp. 7-12) I would describe every single interaction with Paul as a caring moment.

Time marched on for Paul and me. Each day I would request to care for Paul and soon I found myself staying for a while after my shift was over. I would watch television with him or just tell him about my plans for the evening. My plans were never that exciting, as I had found that large city to be an often lonely place. Perhaps that was just it; Paul and I were both alone. Whatever the case, I could tell that Paul knew that I cared about him. He never said the words to me, but we had a connection between our spirits, and I could feel it. That connection was one that is referred to by Watson, but at the time I did not realize what was happening. (Wade, 2006, pp. 163)

Paul stayed in the ICU for about three weeks. He became very short of breath and was placed on a ventilator. I continued to care for Paul and hated watching him suffer. Yes, there were sedatives, but Paul would sometimes look at me with desperate eyes and I knew what he was thinking, “I don’t want to die like this.” I just knew that this person I had made a connection with, this lover of folk music, this kindred spirit, needed me to advocate for him. One day I decided to do just that. When the attending and residents made their grand rounds I spoke up and told them that I thought Paul would like to be extubated. Much to my surprise, the attending physician asked Paul, who was only minimally sedated, if he would indeed like to be removed from the ventilator. Paul shook his head “yes.” I was happy for Paul and sad for him all at the same time. I knew that the end would be closer for him now.

After Paul was removed from the ventilator he began to insist, in fact beg, that I call his parents in New York. I was hesitant at first because he had previously told me of their estranged relationship. I didn’t think they would be receptive to a stranger calling to tell them about their gay, sick, and dying son. Still, Paul asked me to help him. Of course, I couldn’t continue to say no. I had come so far in my relationship with Paul; I knew I had to continue to care for him. Our connection had taught me so much, I couldn’t abandon him now. I had learned how to accept people just where they were. I learned how to be brave by standing up for those who can’t speak. I learned how to listen even when no one was speaking. Most of all, I learned how to be free, how to sing and not care who was listening, how to be free from the fear that was associated with AIDS. I made the call.

The voice on the other end of the line was that of a female; Paul’s mother. Trying to mask my southern drawl, I told her that I was taking care of her son who was very sick. I told her that he missed her and that he had asked me to call. There was silence on the other end of the line. I waited for a few minutes, and then spoke again. I told her that I knew Paul’s life was fragile and would be over soon. I also told her that I knew she was in New York City but that a few hours train ride would have her in DC soon. Still, there was silence. After a bit longer, I realized that Paul’s mother wasn’t coming. I asked her if she wanted me to give any messages to Paul. She said in a very shaky voice, “Tell him I love him.” I assured her that I would deliver that message. I hung up the phone and I cried. I cried from a place so deep that I don’t care to access it again.

A short walk back to Paul’s bedside seemed like miles to me. I opened the door and looked directly at the frail, markedly thin, desperately alone man who had touched my life. He knew immediately what the outcome of my call was. My poker face was failing me miserably. There was no need for me to speak, no need for words at all. I simply sat down beside him and watched as tears began to stream down his face. Despite my dislike of crying, I could not stop my tears from falling; nor can I now as I write these words. By allowing Paul to express himself, Watson’s carative factor was being utilized. (Cossette, 2006, pp. 198-214)

My shift was near its’ end, but I was there for the duration with Paul. His breathing became more and more labored and he slipped in and out of consciousness for the next several hours. There I sat in my scrubs that smelled of a day’s work and with my stomach hungry. I could barely sense anything other than Paul’s dying process. As Paul lay dying, I began to feel as if my very purpose in life might be this singular act of caring. I don’t believe I could have been pried from that spot by the strongest forces in the universe. I knew that I was meant, perhaps even destined, to be in the grips of the bond that was pulling Paul and me together.

As I think back on it now, it was one of the most precious moments that I have ever experienced in nursing. The interaction that I had with Paul over those few weeks of my young life most assuredly describes Watson’s Theory metaparadigm in an active state. I don’t know of any action within my abilities that would have made Paul’s death any more comfortable. Perhaps if his mother had come, he would have felt more secure. At the risk of sounding harsh, I’m somewhere close to grateful that she didn’t come. I’m glad that Paul died with someone who could accept him for exactly who he was.

~~~~~~~~~~

Cindy Cooper, RN can be reached at coop695@gmail.com for compliments on this important work.

"It's OK to Die" is a ground-breaking book filled with graphic stories straight out of the Emergency Room illustrating how most Americans are completely unprepared for death and dying. In response, the authors have created a unique and comprehensive guide urging EVERYONE to prepare in advance, to assure their own peace and to prevent the suffering of their loved ones. Learn More..

7 thoughts on “Paul, AIDS and a Lesson in Caring by Cynthia Cooper, RN”

Paul’s gift to Cindy. Our patients are the real teachers, no matter how good the nursing or other health care school. Clearly, Cindy was an excellent student. She listened. That in itself is not easy. Most people can’t do it. To listen to the inner self of another person is the true art behind the science. The best health care professionals are able to practice both, the art as well as the science. To be human is to seek community and kinship. We are human first of all. Paul was lucky to find a kindred spirit at the end of his life. Cindy was lucky to find a kindred spirit at the beginning of her career. Extraordinary and remarkable how that works — Paul’s life continues in Cindy’s work. Cindy’s gift to Paul. — Death ends a life, not a relationship.

Cindy — as a nurse educator, but a nurse just as you are first; I commend you on this beautiful, authentic connection, service, awareness, wisdom, renewal and competence in caring. You’re a competent and caring professional, a model. While nurses do these things every day, not all or maybe even only a few, articulate what nurses do and do so well.

Monica — Thank you for always ‘seeing’ nurses and what they do, and for inviting our voice into the picture of health care. It matters.

This quote, for me, is the essence of being-with another, whether at the end of life, or in the midst of its journey. For who among us truly knows when the journey will end? Being ready to be fully present is a precious gift to ourselves and all others in our lives.

Thank you, Dr. Monica, for sharing this deeply resonant article and for all who commented. Giving us the gift Paul and Cindy shared means we too may benefit from its beauty.

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